Meet Bradley Crown

Find out what journalist and CF patient Bradley Crown uncovers on campus in his illustrated short, Truth or Dare?

Bradley Crown is an aspiring journalist on a mission. He just needs to uncover a big story in order to join the staff of the school’s paper. One night on campus he finds his first break – or maybe it finds him. Bradley is set on getting to the bottom of the mystery, but he also has to manage his CF treatments. Finding the right balance is not always easy. Will Bradley give in to the pressure or will he take control and face his fears?

Visit CFLiving.com to read Bradley’s story and find out how he dares to find the truth, or click here.

7 year itch

Sad, Sad, Day last Wed I went to flush my Thipple like I do every month. My Thipple for those of you that don't know is my portacath my permanent IV in my chest, hence the name Thipple for third nipple ;)

Well it wouldn't flush.... Surprisingly I was calm. So I pulled the needle and got out another kit and did all the steps over again and inserted another needle, still nothing. Surprisingly still calm too.

So I headed up to the hospital and I figured it just needed some TPA which is what can clear any clots but I have never done this before. So the sweet nurse took out my needle and reinserted another one she missed and went into the tissue... ok not calm any more I had some tears welling up. She insisted it was fine and this sometimes happens so she inserted another needle yes this is poke number 4 but who's counting. Finally she was in but so was I two pokes ago but she was just making sure which I totally understood so she got some saline to go through it and it stung and was VERY uncomfortable. So she called in some back up, they all decided I needed to go to IR to get some pictures and run some dye through it to see what the problem may be because it could be leaking cause it's old. (sigh) Okay more tears welled up, I just kept looking at the ceiling heaven forbid one fall down my cheek ;)

Let me also remind you that I treat my port like it as is fragile as spun glass. I flush it every month I NEVER let them draw blood from it and I always make everyone glove up if they are going to be doing anything that involves my Thipple.

So I headed to IR and right away there were some concerns... gulp! Apparently it moved somehow and instead of the line going straight across my chest it is all wavy and the tip of it is stuck in the vein against the wall of it or in another superficial vein not allowing anything in or out. It's a 1 in a billion chance this can happen but I know 2 others that this has happened too, so I am thinking that figures are a bit off ;) or all 3 of us need to head to Vegas with those odds ;)

So I am sad to report my Thipple is no longer working. RIP!!! I have had it for almost 7 years they say that's a long time and I was hoping for 10 but maybe Thipple #2 can go 10, it's always good to have a goal. I have a clinic visit on the 10th and if I have to be admitted then we will remove and replace it then. If I don't go in then well not sure maybe just remove it for now or wait I guess we will have to discuss all that on the 10th.

The sweet nurse from the infusion clinic called me the next day to see how I was, she really was SO great. I will have to take them cookies or something on the 10th. So thats the story of my Thipple and the 7 year itch ;)

I hope everyone has a fabulous week!

Xo

Here's a pic of me and My Thipple 

Sting Gone Bad

Day 1 after the lil bastard got me 

 Day 3 I thought it was looking pretty good just some bruising

Day 7 some weird red lines showed up didn't think to much about it

Day 8 woke up to it being red beginning to think this was not normal healing process but it's my first time being stung I had no idea.

Still Day 8 My Doc instructed me to go to the ER fearful it was Cellulitis. Sure enough I was diagnosed with a cellulitis infection and had to be on 2 very strong abx. If it went out of the line I was suppose to head back.

Day 9 I didn't head back because it still hadn't been 24 hours and the abx need at least that to start working so I watched it closely and applied heat to it, all while being bored out of my mind with my leg elevated. Utah beat BYU 54-10 this day so that helped with the healing process I believe ;)

Day 10 getting better there is some neosporin on it so it looks gross

Day 11

Day 12 went and showed my Doc today he said it's on the mend but to keep watching it went back home for my last day of elevation.

Day 13

Day 14

I stopped documenting after day 14, today is day 19 and its SO much better all that's left is a lil bruising and the hole scab where the stinger went in. Let's hope I can go another 32 years without being stung again... GEEZ!!!!!

Good news is it's almost winter where we get a nice lil break from anything black and yellow.
Happy Mon everyone! :)

CFLiving video short #2

NEW~ Now online! Go check it out!

Living with cystic fibrosis means making time to fit your treatments into your busy schedule. 

Click on this link http://bit.ly/qCFQGQ, and you can check out a Video Short in which CF patients, experts and caregivers discuss the importance of establishing a routine and understanding how your daily treatments work to help keep you healthy. The video features Lisa Greene, certified parent coach, educator, and co-author of Parenting Children with Health Issues; Dr. Foster Cline, child psychiatrist, co-founder of the Love & Logic® Institute and co-author of Parenting Children with Health Issues; America’s Got Talent finalists, Ali and Christina Christensen, and their parents; Kat Quinn East, CF parent and founder of the Blooming Rose Foundation; and Somer Love, an adult with CF and author of the blog, Love to Breathe. The stories in this second installment of the CF Community Video Short series may help you to find new ways to motivate your kids to adhere to their treatments and instill the power of choice.

Wordless Wednesday

Wearing her McNoodle shirt :)

Buzz worthy

IT HAPPENED!!!!!!!

After 32 years of escaping the black and yellow creatures I got stung! You all know my worst fears are bees and spiders, well I went down screaming and in a huge panic. *** Note*** when I say bees this includes wasps, yellow jackets etc. I do think it was more of a wasp that got me considering there was no stinger.

The lil bastard guy was stuck in my leg and I screamed to get him, out lets just say I went into panic mode not knowing if I would be allergic. Apparently tho its the second time you get stung you have to worry about. UGH!!!! I did have a lil bit of a reaction tho so after popping 2 benedryl the site was still red and throbbing. Today 5 days after it is black and blue and under the actual red dot there is a welt. Let's just hope I can go another 32 years without this happening again. Those lil buggers hurt and I am pretty sure I have a pretty high tolerance for pain. Below is the pic I took last night it looks much better.

Happy Monday everyone!!!
Xo

From Bad to Good

I am sipping on an 8oz glass of cranberry watermelon flavored GoodBelly as I write this...

Ok so a lot of us know about the "Cf Belly" Ugh! My system has been in a funk lately and I am not keen on taking miralax all the time so I try to drink prune juice and I use a probiotic and everything else you could think of under the sun.

Emily Schaller told me about GoodBelly about a month ago and when I first went to the lil health store that I go to it was sold out, I took it being sold out as a good sign. So then I happened to see it in Whole Foods and I gave it a whirl. I LOVE IT!!!!

So I signed up for the 12 day challenge and I am on day 17 :) I am loving this no bloat going twice a day feeling. TMI I know ;) But I challenge you to also give it a whirl I think you will like it not to mention you get amazing coupons when you sign up on www.goodbelly.com And also it tastes great, I have yet to have a gross flavor I have tried mango, cranberry watermelon and the blueberry acai. With flu and cold season our immune systems are going to need all the help they can get and this probiotic drink supports the immune system.

If you give it a whirl let me know what you think about it. I hope all of you had a great Labor day weekend. Fall is in the air and I am excited for a bit cooler temps. Have a great week. Xo